Wednesday, April 27, 2011

Thank you to Dr. Sanders and the New York Times for shining a spotlight on Cushing's patients and offering a different perspective for their family and friends who struggle to support them. -m

EXCERPT: With a disease like Cushing’s, our specialist approach to medicine makes us seem like the proverbial blind men examining the elephant. Each specialist can identify what he is seeing, and yet the whole picture will be missed.

Most of the time, that kind of piecemeal medicine works just fine. But the problem is that the cases in which a different approach is required often are tough to distinguish from the bread-and-butter stuff we see every day.

April 21, 2011, 8:27 AM

Think Like a Doctor: A Litany of Symptoms Solved!

On Wednesday I challenged readers to solve a complicated case of a 76-year-old woman who became physically and mentally debilitated over a matter of months.

More than 500 readers weighed in with diagnoses that included porphyria, thrombotic thrombocytopenic purpura and lupus. As of late Wednesday night, 15 readers had come up with the right diagnosis. And the winning answer is:

Diagnosis: Cushing’s syndrome.

The first answer came early. At 12:54 a.m. Eastern time, Dr. Elizabeth Neary, a pediatrician in Madison, Wis., was the first reader to put all the patient’s symptoms together and reach the correct diagnosis.

The wide range of complaints that characterize Cushing’s syndrome was first described by Dr. Harvey Cushing in 1932. In this disease, the adrenal glands churn out too much cortisol, an essential hormone involved in our body’s response to stress. Cortisol helps maintain blood pressure, reduces the immune system’s inflammatory response and increases blood sugar levels — all vital processes for helping our bodies cope with biological and environmental stress.

But long-term exposure to high levels of cortisol can cause osteoporosis, diabetes, high blood pressure, muscle weakness, memory loss and psychiatric disease. It causes the skin to thin and weaken, making it susceptible to bruises that are often dark and dramatic looking. The lesions on this patient’s arms and legs were signs of this.

Cushing’s syndrome is unusual, but a milder version of the disease can be seen in patients who use steroid hormones like prednisone for the treatment of asthma, rheumatoid arthritis or other inflammatory diseases. However, in this case, the syndrome is believed to have been caused by a tiny tumor that was triggering the constant release of high doses of cortisol.

How the Diagnosis Was Made:

When the patient and her two daughters arrived at Waterbury Hospital, Dr. Rachel Lovins met them in the emergency room. She had been introduced to their mother some years earlier, but now she didn’t recognize the woman who sat before her in the wheelchair.

She had gained a lot of weight, her face was much rounder than Dr. Lovins remembered, and her hair, which had been dark and curly, was thin, gray and uncombed. Over the past year or so, Dr. Lovins had heard her friends talk about their mother’s weakness and decline. Seeing her now, it was clear that her illness had taken its toll. Dr. Lovins excused herself to allow the patient to change into her hospital gown. She would see her again once she had been evaluated in the E.R. and admitted to the hospital.

When she returned later, she stood in the doorway and watched as Dr. Chris Mikos, an E.R. physician, lifted the woman’s hospital gown to examine her abdomen. When he did that, Dr. Lovins saw that the woman had red, almost purple stretch marks on her abdomen.

Suddenly the whole case made sense. Dr. Lovins realized the patient might have Cushing’s syndrome. These stretch marks, known as striae, are the result of the thinning of the skin caused by the excess cortisol. It’s a classic finding in Cushing’s. The patient’s primary doctor may not have seen these marks because she probably didn’t have this debilitated elderly woman change into a gown for every visit.

The test used to look for Cushing’s syndrome is called the dexamethasone suppression test. In this test, you give the patient a dose of a steroid hormone, dexamethasone. If the patient has a normal stress hormone system, then the amount of cortisol in the body will drop dramatically as the body reacts to the steroid and begins to suppress its own cortisol production. A normal patient would post a reading of less than five when it’s measured several hours into the test. This patient’s cortisol was eight times that.

Most of the time, Cushing’s syndrome is caused by a tumor in the pituitary gland in the brain, which in turn causes the adrenal gland to overproduce cortisol. In these cases, surgical removal of the tumor will cure Cushing’s.

But in this case, no tumor was found in the pituitary or elsewhere in the patient’s body. Even so, her doctors still believe that a tumor is triggering the excessive cortisol release, but the tumor is too small to locate.

This patient was started on a medication that prevents the overproduction of cortisol, but she had to stop because of side effects. She is waiting to start the next medicine. If that fails, she will have surgery to remove her adrenal glands. When I saw her last she was doing better but wondered out loud whether she would ever walk again.

Why It Was a Difficult Case:

Because cortisol is a hormone that affects every part of the body, the effects of Cushing’s syndrome are wide ranging, and there is no single symptom that announces that a patient has the disease.

Some of this patient’s complaints were pretty common for a woman her age. She’d gained weight. She was tired. She was depressed. She had high blood pressure. She had cataracts. She had swelling in her legs. All of these are symptoms of Cushing’s, but they are also common in patients without Cushing’s.

On the other hand, she had some unusual problems as well. Her muscles were weak. She had a high white blood cell count. She’d had a gastrointestinal bleed. Still, it wasn’t until you put it all together that it became clear that this woman’s many health problems were all related to Cushing’s.

The patient’s oldest daughter sent an e-mail to her friends telling the story of her mother’s ordeal and of her own frustration in pursuing this unifying diagnosis.

We were told that her psychological state, her neurological problem, her circulation issues and her excessive bleeding were an unrelated bunch of unfortunate circumstances conspiring to make this woman ill. “It happens when you are old,” we were told more than once.

With a disease like Cushing’s, our specialist approach to medicine makes us seem like the proverbial blind men examining the elephant. Each specialist can identify what he is seeing, and yet the whole picture will be missed.

Most of the time, that kind of piecemeal medicine works just fine. But the problem is that the cases in which a different approach is required often are tough to distinguish from the bread-and-butter stuff we see every day.

Readers who come to this column already know it will highlight an unusual case, and as a result, you are ready to take on all the exotic possibilities. Because of that, you are way ahead of the doctor who has to figure out which patient, out of all the patients she’s seen that day, needs something special. That recognition is the start of diagnosis.

This is so much fun -and so important to get the word out. Plus, this shows how much a patient suffers while them doctors fail to diagnose and treat the disease. SuRpRiSe -- the symptoms don't get better.

If you missed out, here’s another chance to play medical detective. Below you’ll find a summary of a new case. The first reader to solve it gets a signed copy of my book, “Every Patient Tells a Story,” along with the satisfaction of knowing you could outdiagnose Gregory House. Let’s get started.

The Presenting Problem:

An otherwise healthy 76-year-old woman with intestinal bleeding and complaints of weakness, fatigue and mood swings.

The Patient’s Story:

A fiercely independent and active 76-year-old woman had spent several years caring for her aged mother, who died at 99. Weeks after her mother’s death, she collapses at home. She was found to have bleeding from a collection of abnormal blood vessels (known as arteriovenous malformations) in her colon. In the months after treatment, her red blood count returned to normal, but she complained of persistent fatigue and weakness. She told her daughters that she was more tired than she’d ever been in her life, calling it “the big emptiness.”

The Doctor’s Exam:

Dr. Susan Wiskowski, a family physician in Hartford, had been the woman’s doctor for several years and knew her well. Until this year, the patient had been in good health for her age, with only a few medical problems: high blood pressure, which was controlled with just one medication; hypothyroidism, treated with Synthroid; and cataracts, which had been surgically repaired.

Because heart disease can manifest as weakness and fatigue, particularly in the elderly, Dr. Wiskowski referred her patient for a cardiac workup. She also referred the woman to a hematologist, to check on a slightly elevated white blood count detected during the bleeding episode.

Meeting With the Specialists:

Cardiology: A stress test suggested that the patient had blockages in the arteries to her heart, but an echocardiogram and cardiac catheterization showed no evidence of heart disease. These last tests revealed a narrowing of one of the heart valves, a condition that was probably longstanding but might have been contributing to her fatigue. Read the cardiologist’s report (July 2010).

Hematology: The hematologist could not identify the cause of the slightly elevated white cell count. All his tests, including a bone marrow biopsy, were unrevealing. Read the hematologist’s letter (July 2010).

The Follow-Up:

A few weeks after the cardiac workup, the patient seemed to have some kind of nervous breakdown, something which she had never experienced before. Despite her complaints of weakness, the woman veered between bursts of activity — endlessly cleaning her house, giving large dinner parties — and weeks of isolation and fatigue. She was sometimes elated, even giddy, telling any one who would listen that she’d found where heaven was located. More recently, she’d started talking about giving away all her possessions. Her daughters called 911, and the woman was taken to the emergency room at St. Francis Hospital in Hartford.

Diagnoses:

Hematoma: During her hospital visit, doctors discovered an extensive hematoma on the patient’s right groin and leg, which had developed after the cardiac catheterization a month earlier. She was admitted to the hospital.

Bipolar Disorder: A psychiatrist diagnosed bipolar disorder and started the woman on several medications to stabilize her mood. There was some family history of psychiatric illness.

Additional Test Results:

Treatment of the hematoma kept the woman in the hospital for several days, during which her daughters urged doctors to perform an M.R.I. or some other test that might identify the source of their mother’s persistent weakness and deteriorating health.

Nerve conduction studies that looked at the nerves that power the muscles in her arms and legs were abnormal. Based on these tests, the neurologist thought that she had nerve damage, probably caused by a recent viral infection. Read theneurologist’s letter (Sept. 2010) here.

Frustrated by their mother’s continued decline, her daughters decided to try to intervene once again. They had jointly been appointed their mother’s health care proxy and made an appointment for her to see her primary care doctor. When Dr. Wiskowski entered the exam room, she expected to see her 76-year-old patient. What she found instead were two middle-aged women she’d never met. They introduced themselves as her patient’s daughters. Their mother didn’t want to come, the older daughter told her, because she was too tired and in too much pain. “I saw her last week; she knows what I look like,” she had told her daughters.

They had come in her stead because over the past months they had seen their mother transformed from the dynamic, energetic and competent woman they’d known all their lives to the disabled and sometimes demented person she’d become, battered and baffled by the many problems she’d developed.

Their mother had gained weight and lost hair, and her legs were swollen and painful. After trying a cane, then a walker, she was now in a wheelchair. The oldest daughter, who lived in California and hadn’t seen her mother in several months, told the doctor she barely recognized her mother this visit. Her mother’s ebullient personality had changed as well, and she was now making plans to move to a nursing home. Was it possible that all their mother’s problems were related?

The doctor listened but told them that she thought all their mother’s symptoms could be explained by the existing diagnoses. Sometimes a combination of illnesses can conspire to make the patient appear very sick, she added.

The daughters considered this conclusion sadly. The implication was clear. There was nothing more to be done. As the daughters prepared to leave, one of them showed the doctor cellphone photographs of lesions on the back of their mother’s hand and arm (see photographs at right). Dr. Wiskowski noted that the patient didn’t have these lesions a week earlier when she had last examined her. She told the daughters their mother should be taken to the emergency room to be fully evaluated.

Instead of going back to the same hospital where their mother had been cared for in the past, the daughters decided to take her to the emergency department of a different hospital in a town nearby where a doctor they knew practiced. Dr. Rachel Lovins ran the hospitalist program at Waterbury Hospital in Waterbury, Conn. (Hospitalists are members of a new specialty of doctors who specialize in caring for patients while they are in the hospital.) Dr. Wiskowski sent over key parts of the patient’s work-up to aid the doctor. This included reports from the specialists, a list of the patient’s medical problems (April 2010) andlaboratory test results (Feb. 2011).

The Challenge: Can you figure out what’s going on with this patient with weakness, psychiatric symptoms and these unusual lesions on her arms and hands?

Rules and Regulations: Post your questions and comments for Dr. Sanders in the Comments section, below. Dr. Sanders will be responding to select questions and comments throughout the day and into the evening. The correct answer to the case will be posted the following day in a separate posting on the Well blog. Select questions and comments from readers may also be included in print form in a coming issue of The New York Times Magazine.

The first reader to identify the correct diagnosis wins a signed copy of Dr. Sanders’s book “Every Patient Tells a Story” (Broadway Books). We will contact you if you are the prizewinner. Readers who enter their solutions on The New York Times Facebook page are not eligible to be considered in the contest pool; please enter your submissions in the Comments box below.

Tuesday, April 26, 2011

Blood draw to check electrolytes and cortisol/ACTH after keeping medicine that will save my life!! away from me for 24 hours. That's a cool feeling.

Arrive at Lola's at 8:40 am to find 2.5 year old is sick and wants dada only. Mama can't lift and console. Family sleeps off two hours in family bed. Mom is in pain, trapped, and doses for 15 minutes.

Many dirty diapers later... E heads to Lola's around dinner time with no relief for fever or diaper contents. She's miserable. My poor baby. Mama can't even take care of you. She can't even take care of herself. I take Ambien 10 mg at 9 pm. Helloooooo? Take another half at 1145 pm. Sleep found me by 12:30 am and up by 7:30 am for ...

Hydrocortisone (HC is generic, I pay extra for brand Cortef) dose: 20 mg at 8 am, 0 at 2 pm. Skipping afternoon dose to get hormones and electrolytes tested on post op day 5. Hormones get out of whack after pituitary surgery and must be tested. These include igf-1, cortisol 8am, ACTH.

Scheduled my 8 am appointment at Quest Diagnostics lab last week before surgery. Hope to get in and out of there quickly.

Feeling: overall, bad, which is good after pituitary surgery. Nauseous, really tired, muscle fatigue, stuffy head and nose, back pain, leg pain, calf cramps. Not pleasant at all, but I hope I feel stronger every day. Get through by: Taking phenergen for nausea, vicodin for pain, bananas for muscle cramps and Gatorade, G2, and V8 juice to keep electrolytes balanced. Odd symptoms: ears ringing. Noticed this first when we got home last night. Constant insect chirping noise. Worse with buzzing from ceiling fan or sound machine. Very strange. I want to keep the room quiet and dark. I can stay focused better on movies better than tivo TV with commercials and distractions. I hate extra noise. Boo.

Naps. I woke from sleep at 430 am Sunday morning. Watched tv until 830. Back to sleep by 9:00 am, I think. Slept until 2:30 pm, ate, went back to sleep and up again at 630 pm. I'm tired but hanging in there. Back to bed soon, as it is already 12:30 am Monday!

See da punkin? No too tired to see da punkin today. Uncertainty over how I'd be without my afternoon dose of cortef made us decide to play it conservatively and try to store up energy for tomorrow's lab draw. Even skipped a shower for the cause. I just couldn't chance burning through all my hydrocortisone replacement when I may need it for little things, like blood pressure and electrolyte balance etc. I'll see her tomorrow. I'm sad but she needs me long term. I really do miss her, and I hope I can be an even better mama soon. We'll do our Easter celebration next weekend after some needed recovery time. Thanks to dh j for fetching things, feeding me, and overall loving me and making me get comfortable. Thanks to my sister and her family for bringing us a yummy Easter meal of ham, sweet potatoes, broccoli casserole, and beans. It was so delicious, Ella. Thanks to all my fam for help: visits to the hospital despite full and crazy parking garages, high pony tails so they don't interfere with all the lying down an relaxing, and taking care of da punkin at home with extra love and attention. She's loving her some dairy queen now. Every ounce adds up. Thanks to everyone for all the kinds words and joke attempts. I love y'all!

Saturday, April 23, 2011

Out of the hospital. Dropping off rxs now, one for pain (vicodin), another for nausea (zofran).

I picked up my iphone for the first time an hour ago after 4 days. What a change!! I'm usually so busy on this thing.

I have been miserable. Worst pain and hospital experience of my life!! I had the room dark, eyes closed, in pain, minimal talking, no noise, no tv. Just wanted to survive the pain, not from my brain. It was every muscle in my body. Perhaps my growth hormone, also produced in the pituitary, could have been affected during surgery, causing all the socially isolating symptoms.

I'll feel better after a small subway sandwich and good nap in my own bed.

I have been discharged, and we are waiting for transport to wheel me down to the car.

I'm okay. Ready to sleep at home. Surgery looks like a success, given my major withdrawal symptoms from the cortisal even on day 1 post op. This road to recover will be very bumpy, and I will feel worse for 6-12 months before I feel any relief. M

We are waiting to get discharge clearance from internal medicine for the Diabetes Insipitis and then the neuro should write the discharge orders. Melissa is still tired from not sleeping for the first 48 hours post op. She did get some rest last night. She hasn't read any txt messages, but wanted to thank everyone for the messages and good wishes!

Wednesday, April 20, 2011

With Melissa now in recovery, the good news is she feels awful! This is a good sign that maybe the cushing's is gone with that tumor. She is managing now that she recieved her first post op dose of hydrocortisone an hour ago. Poor thing is still in quite a bit of pain and discomfort from all the rattling around done in her head. Will be moving out of recovery soon.

Melissa is in recovery and the doctor said he was able to remove a 4-5mm tumor from the right side of the glad! No csf leaks or other complication to this point. Also didn't have to cut the gland so hopefully function of glad should be good. Waiting to go back to recovery, hopefully within the hour. Thanks everyone for your support and good thoughts!

We made it here 10 minutes before report time of 5:15 am. I'm standing in a line with 7 people ahead of me... All of us waiting to check in!! All of these people in this massive hospital complex are here because they have or support someone with a tumor. All of them scared like me but taking the steps to get better. Wow.

4:15 am. I leave house to go to hospital 5:15 am. I report to admissions; prepped for surgery. 7:30 am. Surgery begins. Neurosurgeon starts real work. Surgery will take 3.5-4 hours. 11:30a-12:30 p. Neurosurgeon comes out to talk to family, once he knows I am stable and ok in recovery. I will be in recovery for 3-5 hrs until they release me. 4-6 pm. If ok, i'll be released to my private patient room. I am tired but extremely calm. I was at MD anderson today from 8:30 am to 4:45 pm. However, I've been waiting for this second surgery since October 2009. It is time. I don't know how I lasted 18 more months with this blasted disease! I am ready.

Gonna try to squeak out 4 hours of sleep. Good night, everyone! See you on the other side of Cushing's.

Sunday, April 17, 2011

Well, it's that time again. I am three days away from my second pituitary surgery. Let's hope the neurosurgeon gets all the trouble maker tumor cells this time.

Ever on the quest to ensure the world knows about the dreadful Cushing's disease, I am reposting Pituitary Surgery FAQs. Same surgery. Same doctor. This time, we are going after the tumor on the right side of the pituitary and cleaning the edges of the tumor that was removed on the left side in June 2009.

Saturday, April 9, 2011

Thanks to Beth for creating this poll for us!A Glimpse of Cushings.. by the numbers!
by Beth Grant on Friday, April 8, 2011 at 9:38pm

I created a web-poll about 'The Face of Cushings' and had 55 of my fellow Cushies respond anonymously. The poll is still available to respond to as well, but here's the current statistics as of April 8th, 2011 - Cushings Awareness Day!

The first number after each response is the number out of 55 people who chose each response, then it's followed by the total percentage. I did forget to include some possible responses, so the poll cannot be viewed as 100% accurate, however this should give you a better picture of what we all are dealing with on a larger scale.

Please feel free to share this so more people can see some of what we deal with and perhaps raising awareness will help other people get closer to a diagnosis and faster treatment so nobody has to suffer like I have.

Thank you to all those who responded to my poll and who help to spread the word, and of course thank you to those who help support me!

Question 4*How old were you when you first started experiencing symptoms:
15 or younger 15 27%
16-20 years old 7 13%
21-25 years old 9 16%
26-35 years old 12 22%
36-40 years old 7 13%
41-50 years old 4 7%
50+ years old 1 2%

Question 5*How old are you now?
15 years old or younger 0 0%
15-20 years old 2 4%
21-25 years old 3 5%
26-30 years old 5 9%
31-35 years old 10 18%
36-40 years old 11 20%
41-45 years old 6 11%
46-50 years old 4 7%
50+ years old 14 25%

Question 6*How long did it take for you to be diagnosed?
Less than 1 year 7 13%
1-2 years 9 16%
2-3 years 6 11%
3-5 years 8 15%
5-10 years 9 16%
10+ years 8 15%
Undiagnosed 8 15%

Question 16*Are you currently:
Working 19 35%
Going to school 3 5%
Working AND going to school 2 4%
Was working and had to quit 23 42%
Was going to school and had to quit 0 0%
Working and going to school and had to quit 2 4%
Retired 2 4% Never worked 4 7%

Question 18*Were you able to be treated locally or did you have to travel?
All treatment was local 11 20%
Some treatment local traveled for other 18 33%
Had to travel for all treatment 18 33%
Have not been treated yet 8 15%

Question 19*Has your treatment been successful?
Yes I am in remission 18 33%
No I am still sick 10 18%
No I am still sick and I am testing again 4 7%
No I have had a recurrence treated again in remission 3 5%
No I have had a recurrence treated again still sick 9 16%

Friday, April 8, 2011

CUSHIE WARRIORS: MEN, WOMEN & CHILDREN WHO BATTLE CUSHING’S NUMEROUS TIMES IN HOPES OF WINNING THE WAR

Many of you only know one person with Cushing’s. It is difficult to understand or keep up with ‘your person’ as s/he seeks treatment. You have probably never known someone with Cushing’s before, right? You do know, however, that ‘your person’ talks about Cushing’s a lot or is pretty darned passionate about their Cushie friends.

You see, for us, we know MANY people with Cushing’s through Cushings-help.com website. Cushing’s is a house guest who ruins our lives and won’t leave us alone. We lean on and help others even as we struggle to find our way through complicated testing, surgery (-ies), and hopefully, cures. We Cushies all find it incredibly frustrating to have hit the many walls. We see it every day: patients insulted, dismissed, and defeated. When it happens to us, we are often rendered speechless. When we see our fellow Cushies meet the same poor medical treatment, we become incensed. Ultimately, we know our bodies best, and we are found to be correct. We know when we have a disease as devastating as Cushing’s.

For Cushing’s Awareness Day, we compiled this list of Cushing’s patients from all over the world who are fighting Cushing’s and seek treatment and a cure through multiple surgical procedures and even radiation. A glossary of terms is located at the bottom of the list.

Every patient wants to be understood, supported, and cared for. We want you to know that we are one of many who suffer from this ‘rare’ albeit rarely diagnosed disease.

Today, the Cushing community stands before you, asking you to recognize us for the struggles we face and for you to be the most supportive and caring friend or family member you can be to ‘your person.’

(NOTE: This is only a sample collected through a short time on the Cushing’s messages boards. There are many, many more patients like us).

Donna, Winnipeg, Manitoba, Canada
Pituitary surgery Aug2009.
new tumor march 2010 but not told about it until sept2010 when it got to 9mm.
had gamma knife nov. 2010.
still waiting to be better. tumor has not shrunk yet

Sherry C, Silverton OR
1st pituitary surgery 3/2006
2nd pit surgery 9/2006
BLA 10/2006.
Sick since 1999 but diagnosed in 2005.
Tested for 1 year. Knew I had Cushing's since 2004.
Still sick....but it's the aftermath of the damage the cortisol did to me and the steroids now.

Several therapies are available to treat the ACTH-secreting pituitary adenomas of Cushing's disease. The most widely used treatment is surgical removal of the tumor, known as transsphenoidal adenomectomy. Using a special microscope and very fine instruments, the surgeon approaches the pituitary gland through a nostril or an opening made below the upper lip. Because this is an extremely delicate procedure, patients are often referred to centers specializing in this type of surgery. The success, or cure, rate of this procedure is over 80 percent when performed by a surgeon with extensive experience. If surgery fails, or only produces a temporary cure, surgery can be repeated, often with good results. After curative pituitary surgery, the production of ACTH drops two levels below normal. This is a natural, but temporary, drop in ACTH production, and patients are given a synthetic form of cortisol (such as hydrocortisone or prednisone). Most patients can stop this replacement therapy in less than a year.
For patients in whom transsphenoidal surgery has failed or who are not suitable candidates for surgery, radiotherapy is another possible treatment. Radiation to the pituitary gland is given over a 6-week period, with improvement occurring in 40 to 50 percent of adults and up to 80 percent of children. It may take several months or years before patients feel better from radiation treatment alone. However, the combination of radiation and the drug mitotane (Lysodren®) can help speed recovery. Mitotane suppresses cortisol production and lowers plasma and urine hormone levels. Treatment with mitotane alone can be successful in 30 to 40 percent of patients. Other drugs used alone or in combination to control the production of excess cortisol are aminoglutethimide, metyrapone, trilostane and ketoconazole. Each has its own side effects that doctors consider when prescribing therapy for individual patients.

CSF, Cerebrospinal fluid leak: A more rare, although sometimes expected, result of surgery is drainage from the nose of a clear, watery liquid called cerebrospinal fluid (CSF), which is a normal fluid that surrounds the brain. Large pituitary tumors lean up against a membrane that separates this fluid space from the nose, and a CSF leak may occur if this membrane is absent or opened during surgery. The surgeon will generally recognize a CSF leak when it occurs and will "repair" the leak by placing a small amount of abdominal fat over the leak. The patient may awake from surgery and find that it was necessary for the surgeon to place a small tube in the lower back to allow CSF to drain into a bag and help the leak to seal. The tube is placed while the patient is still under anesthesia, and it is not painful while in place. The tube (about 3 millimeters in diameter) will remain in the lower back for 3-5 days and the patient will be kept in the hospital during this period. After the tube is removed (a painless, approximately 15-second procedure), the patient usually will be able to leave the hospital later the same day with the leak sealed. In most cases, CSF leakage does not occur and the patient may expect to go home 2 to 4 days after surgery.

BLA, Bilateral Adrenalectomy: Surgical removal of both the adrenal glands.

Gamma Knife:This is a more focused radiation treatment than conventional radiation, which reduces the risk of hypopituitarism. It provides a large dose of radiation to a tumor so that when the tumor cells divide, they die. As this method depends on the rate of cell division, symptoms may persist long after the radiation treatment.

Radiotherapy, preferably with stereotactic radiation, is effective in controlling tumor growth in the majority of patients who have residual tumor after surgery.

Exactly four years ago in 2007, I cried at home after receiving a call from the doctor's office. The nurse told me that my recent lab results, including a thyroid panel, were normal. That should have been good news, right? WRONG. I didn't feel normal. In fact, I felt worse than I had ever felt before in my life. That afternoon, I took to the computer to research my symptoms on the internet. When I found the Cushings-Help.com message boards, my mouth dropped. It took less than an hour to find my diagnosis.

My husband returned home after his work day less than an hour later. I announced, "I think I have a tumor on the pituitary, which hangs below the brain. I think I have Cushing's disease."

Not one day since has gone by without a thought of Cushing’s. I’ve spent many hours every day thinking about Cushing’s. Have you ever spent 1,461 days of your life sick, trying to save your life, and knowing that if you can’t convince doctors to help you that you may die?It is not easy.Life has not been easy for me or my family these last four years. This word and this disease have infiltrated my life.

I owe my life to MaryO, who founded the Cushing’s Help website and its message boards over 10 years ago after suffering with Cushing’s disease herself. MaryO set forth to create an online community that was lacking when she sought her cure.

I have met many shining souls and made incredible friends participating on the Cushings-Help.com message boards in the past four years. We were lost without each other. We each came to the message boards new and scared.We leaned on each other, as we ran everything about our experiences through these people – these new-found and desperate friends who were in the same boat as us.We learned from each other.Together, we shared our stories of terrible doctors’ appointments where we were dismissed as fat and lazy.We celebrated every high test result, every clearance for surgery, and all the other details that move us forward on the journey for this disease. In this community, we found the strength to keep fighting to get cured from the disease that we were sure we had but others weren’t. We Cushies have faced seemingly insurmountable odds, and we have done so together.

Our fury and outrage male us determined to protect future undiagnosed Cushies from all of our heartaches and woes.We hold a strong desire to create a powerful online community, and in 2008 many of us started personal blogs. My blog Cushing’s Moxie is my platform for outreach, and to date, my blog has been over 116,000 pages views.

I learned from people who had been in my shoes. It was only through struggles with doctors and testing to diagnosis to surgery -- with this process often repeated multiple times unfortunately -- and eventually to healing and happiness that I learned what this disease is, how it truly presents itself today (not 20 years ago), how it affects the people who have it, and how to best guide myself through the quagmire. Because of MaryO's compassionate vision and my fellow Cushies’ guidance and support on the message boards, I have steered myself to diagnosis twice for a disease that most have never heard of and doctors consider too rare. I just can't even imagine where I would be without the Cushings-Help.com site.

With Cushing's Awareness Day approaching on April 8th and my 2nd pituitary surgery scheduled for April 20th, I decided to declare April as Cushing's Awareness Month. Goodness sakes, you know we need the extra time! It takes us that long to explain the intricacies of this dangerously elusive disease.

So there you have it. It is Cushing’s Awareness Month.

As such, I decided to raise funds to support the website that saved my life. For my friends and family who have followed me along this bumpy four-year battle, I ask that you consider making a donation to support the community that I have grown to love and call my 2nd family.

Operating and maintaining the Cushings-Help.com site takes money. It is imperative to keep the site free and totally available to all who search the internet for an explanation to their confounding symptoms. We must keep the site operating for others like me who search for their cure. I ask you to join me and donate to the support this important website.

Cushing's is a terrible disease. It ravages the body and nearly destroys a person seeking only diagnosis, treatment, and control of the rest of their life again.

The world must continue to hear about Cushing's, as this disease is not as rare as doctors think. We Cushies believe it is only rarely diagnosed. Please consider a donation to maintain a strong presence on the web for undiagnosed Cushies to find.

I have many interesting posts planned for Cushing’s Awareness Month this April. As I face a daunting second pituitary surgery, I refuse to let the opportunity to help someone pass me by. On April 20th, I will go under general anesthesia and lie on an operating table while the neurosurgeon goes through my nose to cut out a second tumor on the pituitary, only centimeters from my brain.

In the upcoming weeks, you might say to yourself:

“YIKES. She’s been through so much. I love that girl. I’ll ante up a donation of $10 for her Melissa’s moxie.”

Hello to all of you still following along. I wanted to tell all y'all some big news.

I have been diagnosed with cushing's disease again, and I'm off to surgery! I'll have my second pituitary surgery in Houston on April 20, 2011.

I have many details to provide still, and I hope to find time to post back story soon. I will say that we used our tax refund to purchase a new iPad 2, which will making sending updates from the hospital and post-op easier, I hope.

With surgery and the chance to return to the rest of my long life only 17 days away, I think of that 80s song: The future so bright, I gotta wear shades.

THIS IS THE BEST ADVICE BASED ON MY EXPERIENCE.

I encourage you to do midnight testing every night in a row until you get your highs. Do not skip.

Get blood draws at midnight and again 30 minutes later. Chew a salivary cortisol test swab while getting your blood drawn. I got my biggest diagnostic highs doing this, after 4 years of trying to follow doctors' suggestions of tracking symptoms and only testing once a night around midnight.

Remove the guesswork and pressure off yourself to know how cortisol ravages your body as it swings from high to low to high levels. Very few Cushies when their cortisol levels are high v. low, and frankly, it is quite unfair that we should have to know. This disease is an enigma - a mystery wrapped in a riddle. Until someone develops a cortisolometer, similar to a glucometer for testing blood sugar, a Cushing's patient may never know for sure.

Take control. Your mission is to show up every night, and hang in there.

Total Pageviews

Discovery Health's Mystery Diagnosis

When illness strikes, we look to doctors for answers. What if they can't help? For these unlucky patients, diagnosis is a mystery.

Old and New Me

In 2014, i'm reversing my cortisol in search of my old self

Disclaimer: I Am Not a Doctor

I am not a medical professional. I am not a doctor nor have I gone to med school. I am not a physician assistant, a nurse, or a lab technician. I do not currently work in the medical field.

Perhaps what I can provide is actually better and more useful: a tale of odd symptoms, mild physical deformities, and emotional/mental experiences that match your own. It's not just you! I can share my experience in the diagnosis and treatment of my Cushing's disease. Due to this disease's 'rarity,' I relied on my Cushie friends to guide me as we fight this terrible disease. We all quickly learned the basics and the jargon: the body parts, hormone loops, testing protocals, surgical stats, surgeon bios and pedigrees, and paths to recovery. We have seen patients have successful surgeries, and we have seen patients continue to suffer after multiple surgeries. We watch the story of Cushing's unfold for our friends in real time. Our friends are case studies that are unimpressed by whether something meets the standard of 'statistically significant' to be included in the medical literature. We Cushies see and hear it all. We encourage you to grow the same eyes and ears.

We urge you to take an active role in your health care and work closely with medical professionals. If you find a doctor dismissive, find a new one. Use my blog to supplement your knowledge base but never substitute my judgment or decisions for your own.

And please, don't sue me. I have no money left over after medical expenses. One day, I swear, I'm gonna take a nice vacation.

WHERE TO START IF YOU ARE NEW?

This side bar is intended to be a mini Cushings 101. You will find much of what you need to know here. Click through these links and watch these videos. They are my favorites after researching for Cushing's for six full years now. I started this blog in 2008, so the broad view posts about me can be found there. Click around previous blog posts and read, read, read. You will get scared and overwhelmed, but with information, you will start to take charge of your health and you will arm yourself with what you need to win this war. Because you will, you know. You will win this war.

Looking for something? (under construction)

~BEST ADVICE BASED ON MY EXPERIENCE~

This disease is an enigma - a mystery wrapped in a riddle.

Remove the guesswork and pressure off yourself to know how cortisol ravages your body as it swings from high to low to high levels. Very few Cushies when their cortisol levels are high versus low, and frankly, it is quite unfair that we should have to know. Until someone develops a cortisolometer, similar to a glucometer for testing blood sugar, a Cushing's patient may never know for sure whether the cortisol is high or low. I hope the Addison's community will take the lead on that!

I encourage you to test your cortisol testing every night in a row until you get your highs. Do not skip.1) Do 24 hour UFCs with 17-OHS.2) Get cortisol blood draws at midnight and again 30 minutes later.3) Chew a salivary cortisol test swab while getting your blood drawn each time.

I got my biggest diagnostic highs doing this, after 4 years of trying to follow doctors' suggestions of tracking symptoms and only testing once a night around midnight. Take control. Your mission is to show up every night, and hang in there.

TRUST YOUR GUT. It just might save your life.

I am a cyclical Cushing's patient. I had transsphenoidal pituitary brain surgery on June 11, 2009. By going through my nose with scopes and scalpels, my neurosurgeon removed a 3 millimeter ACTH-secreting benign tumor on the left pituitary that disrupted every hormone and every body system. He says the tumor's cytology was consistent with other Cushing's tumors he has removed in the past, meaning that he removed a milky white substance that was different looking that the normal pinkish pituitary gland cells. Within 3 months of my surgery, I knew I was not cured. I still had Cushing's symptoms, and I tested again for a re-occurrence of Cushing's. In 2010 alone, F*I*V*E endocrinologists told me I don't have Cushing's and they think I never did. They said I had pituitary surgery for nothing. That includes two that I saw before my pituitary surgery. It seems doctors really don't know what to do with a Cushing's patient, much less one that comes back still sick after pituitary surgery.

In February 2011, I tested again at my local hospital, and I hit the jackpot: the highest results for midnight cortisol serums and midnight cortisol salivas that I have had in nearly 4 years. I also had nine straight days of high 17-OHS (used to measure urinary cortisol in patients with mild or cyclical Cushing's). I had diagnostic results on three types of cortisol tests: midnight salivary cortisol, midnight cortisol serum, urinary 17-OHS.

I had a 2nd pituitary surgery on April 20, 2011. The neurosurgeon removed a 5-millimeter benign tumor from the right side of my pituitary. I still suffer from high cortisol and high ACTH, with the latter pinpointing the source as pituitary. No tumor shows on my MRI so in August 2012 I started a medical therapy by taking a well-established medication called ketoconazole. This has helped me reverse some but not all of the Cushing's symptoms. Keto can cause liver damage so I must have liver function tests every three months. I hope I can continue to tolerate this medication until a tumor shows. Next MRI scheduled for June 2013.

WHAT DID I LEARN?Rather than test once in a while, I tested every day. My results clearly showed I had an abnormal cortisol production pattern. I was right. Those doctors were wrong. ALL OF THEM WERE WRONG. Trust your gut. You know your body.

Cushing's Awareness Challenge

What Doctors Will Claim You Have Instead of Cushing's:

Fibromyalgia (no lab tests can prove this; diagnosis given when they don't know what else is wrong with you)

Back and muscle pain

Diabetes

Blurred vision, visual field loss, double vision

Chronic fatigue syndrome

Dry, oily, or sweaty skin

Impotence or infertility

Joint pain, joint/bone abnormalities

Migraines

Muscle weakness, carpal tunnel syndrome

Temporomandibular joint/TMJ/jaw joint pain

Thyroid imbalance or "slow metabolism"

Spreading Awareness to the Health Community

Is it possible you have many conditions damaging your body simultaneously? Sure. Is it more likely that you have ONE condition that explains all that ails you? Yes. That could be Cushing's.

In medical school, doctors are trained that it is better to find one diagnosis to fit all symptoms. Go ahead and ask your doctor about that when s/he tells you that you have multiple overlapping illnesses.

Once you get abnormally high biochemical evidence (ACTH and cortisol) in the form of urine, saliva, and/or blood tests, it is highly probable you have Cushing's. Trust your instincts. Don't let the doctors tell you differently.

Different Doctors Treat Symptoms of Cushing's: A List of Professionals You May Have Seen

The pituitary controls the production of every hormone in the body. We Cushies go undiagnosed as we bounce around from medical subfield to subfield. Each doc treats the symptoms they know best, while piling on the medication.

We Cushies later find that our constellation of symptoms are punctuated with abnormal test results hidden away in our patient charts. No one told us. Since our medical history stays with the office not the patient, one change in doctor leaves these clues to diagnosis behind.

This is why I suggest you take a list of symptoms to every appointment. You won't be boxed in by narrowly-focused questions based on one field of medicine, but you can instead partner with your doctors and discuss your symptoms list so you can get the care you deserve.

DON'T GET STUCK SEEING A SPECIALIST WHO TREATS ONLY ONE BODY SYSTEM. CUSHING'S AFFECTS THEM ALL.

DISCLAIMER: ME AND MY CORCEPT

I want to disclose my relationship with Corcept Therapeutics. I participated in their market research study in Philadelphia, CA in February 2012. I gave feedback on marketing material and told my story on camera for internal educational use. Corcept paid for my travel expenses. In July 2012, I met the Cushing's advocate and nurse at the MAGIC Convention in Chicago. We shared a meal as a group, and she kindly paid for our dinner. In addition, I hold stock in Corcept Therapeutics; not because I am rich, but because I have Cushing's.

Please rest assured that this affiliation will never compromise my intent to bring patients all information I can get my hands on to help them on their road to diagnosis and recovery. You have my word.